From reading a bunch of posts, it seems like the correct dosage and timing for Verapamil varies from person to person.

Here's my question, what dosage did folks start on and what kind of indicators did you and your Dr. use to determine when you needed to up your dosage?

My initial dose was 360mg/day in 3 equal doses which I built up to starting at 120mg/day for 5 days, 240mg/day for 5 days before going to the 360mg.

I get my CHs during the day or in the evening, so I was taking them with meals.

This was working fairly well but still quite a few CHs were getting through, so it was changed to 480mg/day in two doses (breakfast / dinner) using the sustained release form. This is working a lot better at keeping the beast away.

Commonly used approach:

Headache. 2004 Nov;44(10):1013-8.   

Individualizing treatment with verapamil for cluster headache patients.

Blau JN, Engel HO.


    Background.-Verapamil is currently the best available prophylactic drug for patients experiencing cluster headaches (CHs). Published papers usually state 240 to 480 mg taken in three divided doses give good results, ranging from 50% to 80%; others mention higher doses-720, even 1200 mg per day. In clinical practice we found we needed to adapt dosage to individual's time of attacks, in particular giving higher doses before going to bed to suppress severe nocturnal episodes. A few only required 120 mg daily. We therefore evolved a scheme for steady and progressive drug increase until satisfactory control had been achieved. Objective.-To find the minimum dose of verapamil required to prevent episodic and chronic cluster headaches by supervising each individual and adjusting the dosage accordingly. Methods.-Consecutive patients with episodic or chronic CH (satisfying International Headache Society (IHS) criteria) were started on verapamil 40 mg in the morning, 80 mg early afternoon, and 80 mg before going to bed. Patients kept a diary of all attacks, recording times of onset, duration, and severity. They were advised, verbally and in writing, to add 40 mg verapamil on alternate days, depending on their attack timing: with nocturnal episodes the first increase was the evening dose and next the afternoon one; when attacks occurred on or soon after waking, we advised setting an alarm clock 2 hours before the usual waking time and then taking the medication. Patients were followed-up at weekly intervals until attacks were controlled. They were also reviewed when a cluster period had ended, and advised to continue on the same dose for a further 2 weeks before starting systematic reduction. Chronic cluster patients were reviewed as often as necessary. Results.-Seventy consecutive patients, 52 with episodic CH during cluster periods and 18 with chronic CH, were all treated with verapamil as above. Complete relief from headaches was obtained in 49 (94%) of 52 with episodic, and 10 (55%) of 18 with chronic CH; the majority needed 200 to 480 mg, but 9 in the episodic, and 3 in the chronic group, needed 520 to 960 mg for control. Ten, 2 in the episodic and 8 in the chronic group, with incomplete relief, required additional therapy-lithium, sumatriptan, or sodium valproate. One patient withdrew because verapamil made her too tired, another developed Stevens-Johnson syndrome, and the drug was withdrawn. Conclusions.-Providing the dosage for each individual is adequate, preventing CH with verapamil is highly effective, taken three (occasionally with higher doses, four) times a day. In the majority (94%) with episodic CH steady dose increase under supervision, totally suppressed attacks. However in the chronic variety only 55% were completely relieved, 69% men, but only 20% women. In both groups, for those with partial attack suppression, additional prophylactic drugs or acute treatment was necessary. (Headache 2004;44:1013-1018).

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SLOW-RELEASE VERAPAMIL

Dr. Sheftell applauded the protocol for verapamil used by Dr. Goadsby and colleagues, which entailed use of short-acting verapamil in increments of 80 mg. “This method was suggested by Lee Kudrow, MD, 20 years ago as an alternative to slow-release verapamil,” Dr. Sheftell noted.

“I would agree with using short-acting verapamil, rather than the sustained-release formulation, in cluster headache,” he said. “I prefer the short-acting formulation with regard to ability to titrate more accurately and safely. My clinical experience anecdotally demonstrates improved responses when patients are switched from sustained-release verapamil to short-acting verapamil.”

Dr. Goadsby agreed that his clinical experience was similar. “There are no well-controlled, placebo-controlled, dose-ranging studies to direct treatment. This is one of those areas where clinicians who treat cluster headache have to combine what modicum of evidence is available with their own clinical experience,” Dr. Sheftell commented.

Thanks Bob!!

I actually just printed this out and dropped it off at my doctor's office.

I started with 80mg twice a day for two days, increased to 160mg twice a day for two days and now I'm up to 240mg twice a day. I also have to take with food since I'm one of the lucky ones that gets extremely lightheaded and dizzy if I don't.

I can taper back down after 2 weeks with no pain/twinges.

Good luck.

~ Katie

Bob has given you the best info on verapamil. But if you want anecdotal evidence, I'll throw my hat in the ring for you. Started on 180mg, was on it for years, clusters grew and grew. Within the last year, went up to 400mg/day. The CHs are in full retreat. I have "room" to go higher if needed since my bp is doing well. Good luck, and God bless! lance

Started on 160 mg per day am now on 360-480mg per day.  Neuro won't up my dose anymore since I am petite in stature.  If things get worse will have to go on Verapamil/Lithium combo.

GINGER:

Title:  Double Blind Comparison of Lithium and Verapamil in Cluster Headache Prophylaxis 
Author: Bussone G, Leone M, et al.
Date:  Posted: January 2010
Source:  Headache  30:411-417, 1990
Chronic Cluster Headache (CCH) treatment is troublesome; since there are no pain-free periods, it must be continuous. The most effective CCH prophylactic drug today is lithium carbonate but long-term use of this drug is limited by the possibility of side effects. Recently, calcium antagonists have been successfully employed to prevent migraine, and preliminary studies also indicate that verapamil in particular is an efficacious treatment for CCH. We have conducted a multicenter trial employing a double-dummy, double blind, cross-over protocol, comparing verapamil with the established efficacy of lithium carbonate, in preventing CCH attacks. BOTH LITHIUM CARBONATE AND VERAPAMIL WERE EFFECTIVE IN PREVENTING CCH BUT VERAPAMIL CAUSED FEWER SIDE EFFECTS and had a shorter latency period. We did not observe any correlation between plasma levels of the two drugs and their clinical efficacy. Both the drugs tested here may exert their effect by restoring a normal inhibitory tone to the pain modulating pathways from the trigemino-vascular system, a circuit putatively implicated in CCH.

I started at 360mg, 120 in am, 240 in pm. For me that was ineffective. Over the months following, this was increased in 120mg intervals up to 720mg. This helped bring my major episodes down from 3-4 a day to 1-2 a day. At 720 I was beginning to have very serios bouts of dizziness and passed out completely on a couple of occasions, so now they are reducing, again at 120mg at a time. Apparently my bp was too low. I'm now heading back down to 480mg a day. It seems to be reducing the dizziness. They also put me on a heart monitor but so far, so good. -Chris

My neuro always had me start at the full dose right away. He said that unless I experienced dizzyness, there's no problem jumping right in. It's coming off that you need to titrate the dosage. This is the same way prednisone is administered - slam it hard to start, then gradually taper off.

Thanks everyone!! I appreciate the technical and the anecdotal stuff, very helpful.

My doc started me a 120 mg, and the extended release (at least I'm assuming that's what "ER" stands for on the label) and I'm just taking 1 dose in the AM.

To be honest, I haven't noticed any relief from the current dosage so I have a call into my doctor about increasing it. However, I have very normal BP so even that dose has made me a little sluggish at times.

I have also noticed a pattern emerging for when I get my hits. I'm getting 4-6 hits a day but the ones I can count on are 7ish am, 9:30ish am, noon (NOW!! ARRGHHH) and 1:30 am, sometimes with a couple in the early evening.

So I'm guessing that, based on some of the responses, the best approach is to take Verapamil a couple of times throughout the day based on timing of hits?

It takes 10-14 days to build up to therapeutic levels in the body, so you won't know until then if you're at the right dosage.

That's why I could never understand ramping up - it could be weeks and weeks until you get to the right dosage for you. Many hits that could be avoided.

Brew wrote on Nov 5^th, 2010 at 12:39pm:

It takes 10-14 days to build up to therapeutic levels in the body, so you won't know until then if you're at the right dosage. That's why I could never understand ramping up - it could be weeks and weeks until you get to the right dosage for you. Many hits that could be avoided.

This makes total sense.

And after you have it under control you can back it off a little. Im seeing my nero next week to talk about Verap for my next cycle(if this last one is done) and I hope he will start high then back off as needed.

Bob Johnson wrote on Nov 5^th, 2010 at 9:41am:

GINGER: Title:  Double Blind Comparison of Lithium and Verapamil in Cluster Headache Prophylaxis  Author: Bussone G, Leone M, et al. Date:  Posted: January 2010 Source:  Headache  30:411-417, 1990 Chronic Cluster Headache (CCH) treatment is troublesome; since there are no pain-free periods, it must be continuous. The most effective CCH prophylactic drug today is lithium carbonate but long-term use of this drug is limited by the possibility of side effects. Recently, calcium antagonists have been successfully employed to prevent migraine, and preliminary studies also indicate that verapamil in particular is an efficacious treatment for CCH. We have conducted a multicenter trial employing a double-dummy, double blind, cross-over protocol, comparing verapamil with the established efficacy of lithium carbonate, in preventing CCH attacks. BOTH LITHIUM CARBONATE AND VERAPAMIL WERE EFFECTIVE IN PREVENTING CCH BUT VERAPAMIL CAUSED FEWER SIDE EFFECTS and had a shorter latency period. We did not observe any correlation between plasma levels of the two drugs and their clinical efficacy. Both the drugs tested here may exert their effect by restoring a normal inhibitory tone to the pain modulating pathways from the trigemino-vascular system, a circuit putatively implicated in CCH.

Thanks for that Bob, you just re-enforced my wish to stay just on the verapamil.  Doc has been pushing me but except for really bad times of the year the verapamil is doing well (knock on wood, fingers crossed   ;D ).  (Bad times being 2-3 hits per day vs 1/day the rest of the year.)  Wonder if he'd consider just putting me on the lithium during really bad times vs constantly...

Wish I would have seen your post before my 6mo neuro visit today.   :D

Quote:

what dosage did folks start on and what kind of indicators did you and your Dr. use to determine when you needed to up your dosage?

Initially starting verapamil, prednisone was also given for the first 20 days, tapering from 100mg to nothing, along with Zantec for the stomach and a sleeping aid, I think Ambien. This covered a three week timespan helping stay pf so the verapamil could be taken gradually up to 360mg.  At that point, it might be tapered up or down according to need.

When starting new medications like verap, it's good to gradually introduce them to avoid sudden changes to a system and to see if any adverse effects may coincide.  Everyone can react differently, stay in contact with your doc during the time after the prednisone with feedback to him for an effective level of verap suiting you.

Keep in mind that the primary indication for Verapamil is high blood pressure. It's intended to lower bp, and is usually given in much smaller doses for that purpose. The dosages we receive can produce some unwanted results, so best to take it slow at first. -Chris

Chris H wrote on Nov 5^th, 2010 at 7:56pm:

Keep in mind that the primary indication for Verapamil is high blood pressure. It's intended to lower bp, and is usually given in much smaller doses for that purpose. The dosages we receive can produce some unwanted results, so best to take it slow at first. -Chris

...unless your doctor directs you otherwise.

Started a cycle on January 8th and got to see my neuro on the 14th. He started me on 480mg for 3 days and now on 720mg...... no attacks for the past three days :)

Yan that's great news. I'm sure the doc told you, but start increasing your fruit and fibre intake. One of the side effects of verap is it'll really back up the old digestive tract. ::) A small price to pay for some time off with the beast.

Also a quick reminder to go easy on the energy drinks while on verapamil, the taurine doesn't play well with the verapamil.

Joe

After reading the anecdotal stuff in this post I realise that my treatment is far from proactive!

I started off on 160mg Verap 80mg twice a day and remained on that for 6 months until my next neuro appt!! my own fault really as I did not research CH following diagnosis ::)
I have recently had my dose increased to 160mg twice a day and at the appt was informed that this was a 'high' dose, I can see from the info on this site that it is not!
I have also printed of the info from Bob and will be handing it to my GP!!

Bob's info is golden, it has all the foot noted medical stuff that doctor's like, as it gives them justifications for the treatments. If possible, organize it and try to get it to your doc a week or so ahead of your appointment. I've found it hard to get a doc to sit and read smething during your appointment, when they're so pressed for time.

Joe